Guest guest Posted March 31, 2012 Report Share Posted March 31, 2012 Hello everyone, I have not posted in awhile. Life has been busy and I just wasn't able to face updating until now. Dad's LBD has progressed. Last week he started becoming hard to handle. Mom is his caregiver and he has lived at home. His hallucinations and acting out his dreams were out of control. We took him to the doctor on Wednesday and he was prescribed Seroquel 50 mg. twice a day and Ativan (Lorazapam) every 6 hours as needed. The drugs knocked him out. I stayed over on Wed. to help mom take care of dad. She was so exhausted. We were taking turns looking in on him. See at that time he still was sleeping in his regular bed and I didn't trust he would call for help in his state of mind. Mom and I had just dozed off at 6:30 a.m. She has a monitor in his room and hers to listen. I heard a terrible crash and realized he had gotten up. He tried to go to the bathroom by himself and fell and hit the side of his head/ear on the tub base. Mom and I had to get him up on our own and that was a challenge. Dad is not a huge man but at a 150 + dead weight, he felt like a ton. We both hurt our back a little and I thought this is not working. I used a sheet wrapped around his back torso and mom wrapped both sides of the sheet with her arms and I pushed from the back and we managed to get him off the floor. Dad fell several times last summer and every time, we had him hospitalized. But this time we didn't take him in, but doctored him ourselves. It doesn't seem like the hospital does much for him when he falls except xrays his head (that's what he hits every time). By Saturday night/Sunday am he had gotten so much worse. It didn't seem like the meds were working at all or they were going against him. He was to the point then that he couldn't even stand on his own with assistance. When I let go of him due to his insistance and obstinence, he fell back on his bed. (forgot to mention we got him a hospital bed by that Friday to keep side rails up). By the last night he was home we were staying up with him around the clock because he was so bad and trying to get out of bed. We had a plan. His hospital had a behavior unit and the doctor had discussed placing him there if he got worse to help regulate his meds. We called the doctor and told him that is what we wanted to do and he told us to take him to the ER for admission. We called the ambulance due to him not able to walk. His been in the behavior unit almost 7 days now. He is much better than he was, but still not able to walk by himself without assistance. His meds are stabilizing him much more than when he was at home, although he is still having hallucinations, but his behavior is a little better regarding aggressiveness. I've noticed the last few days, he doesn't want my mom talking to any of her children while we are in his room visiting. He wants her all to himself. Can't believe he would be jealous of his own children, but I know that is not my dad's behavior if he was mentally well. I have 3 siblings and we have talked with mom about the possibility of placing him in a skilled care nursing home at least for awhile. Mom's back and hip is bad right now due to lifting and pulling on him. We have to give her a chance to get better and healthier. She is only 105 pound petite woman. Mom and I have been visiting nursing homes end of last week and today. I think we have decided to place him in a beautiful home here in my hometown. Mom is about 19 miles away, but this way I can go see him and check on him every day at lunch. The nursing home is skilled and has every amenity one could want. His hall will be for his behavior/condition, with a coded locked door entrance so they cannot escape, a bed and wheelchair with an alarm to help prevent falls, etc. The only thing is when the behavior unit at the hospital transfers him to the nursing home, we are not sure how he will respond or if he will comprehend what we are doing. I'm afraid to tell him ahead of time because it will agitate him into a state. I never gave much thought to this day where I would place my parent in a nursing home. Its difficult, but for now I know its the best thing for all. We cannot afford 24/7 nursing and I cannot quit my job to move in to help take care of him. I will update everyone once he has moved to the nursing home. Thanks for allowing me to vent about our circumstances. You are in my thoughts and prayers through your journey with your LO. Pam Hutchins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Pam that may be the best thing that you can do for your dad. Good nursing homes are staffed with caring professionals who can do things for our loved ones that we can't do ourselves. My mother, though the first few months were very rough, has thrived in her nursing home and is doing MUCH better than she ever would have done at my home (not that that was an option). Their care, the routine that she needs, the social interaction with other residents - all of it - has worked together to give her a very high quality of life. Nursing homes aren't jails, they are places for residents and families to get the help they need from professionals who can provide services that we can't. When you find a good one, it can be a real blessing! Hope you will be able to let us know how things go with him . -- His, Sherry daughter/guardian of , dx 4/09 with LBD, living in a nearby NH > Hello everyone, > > I have not posted in awhile. Life has been busy and I just wasn't able to face updating until now. > > Dad's LBD has progressed. Last week he started becoming hard to handle. Mom is his caregiver and he has lived at home. His hallucinations and acting out his dreams were out of control. We took him to the doctor on Wednesday and he was prescribed Seroquel 50 mg. twice a day and Ativan (Lorazapam) every 6 hours as needed. The drugs knocked him out. I stayed over on Wed. to help mom take care of dad. She was so exhausted. We were taking turns looking in on him. See at that time he still was sleeping in his regular bed and I didn't trust he would call for help in his state of mind. Mom and I had just dozed off at 6:30 a.m. She has a monitor in his room and hers to listen. I heard a terrible crash and realized he had gotten up. He tried to go to the bathroom by himself and fell and hit the side of his head/ear on the tub base. Mom and I had to get him up on our own and that was a challenge. Dad is not a huge man but at a 150 + dead weight, he felt like a ton. We both hurt our back a little and I thought this is not working. I used a sheet wrapped around his back torso and mom wrapped both sides of the sheet with her arms and I pushed from the back and we managed to get him off the floor. Dad fell several times last summer and every time, we had him hospitalized. But this time we didn't take him in, but doctored him ourselves. It doesn't seem like the hospital does much for him when he falls except xrays his head (that's what he hits every time). By Saturday night/Sunday am he had gotten so much worse. It didn't seem like the meds were working at all or they were going against him. He was to the point then that he couldn't even stand on his own with assistance. When I let go of him due to his insistance and obstinence, he fell back on his bed. (forgot to mention we got him a hospital bed by that Friday to keep side rails up). By the last night he was home we were staying up with him around the clock because he was so bad and trying to get out of bed. We had a plan. His hospital had a behavior unit and the doctor had discussed placing him there if he got worse to help regulate his meds. We called the doctor and told him that is what we wanted to do and he told us to take him to the ER for admission. We called the ambulance due to him not able to walk. > > His been in the behavior unit almost 7 days now. He is much better than he was, but still not able to walk by himself without assistance. His meds are stabilizing him much more than when he was at home, although he is still having hallucinations, but his behavior is a little better regarding aggressiveness. > > I've noticed the last few days, he doesn't want my mom talking to any of her children while we are in his room visiting. He wants her all to himself. Can't believe he would be jealous of his own children, but I know that is not my dad's behavior if he was mentally well. > > I have 3 siblings and we have talked with mom about the possibility of placing him in a skilled care nursing home at least for awhile. Mom's back and hip is bad right now due to lifting and pulling on him. We have to give her a chance to get better and healthier. She is only 105 pound petite woman. > > Mom and I have been visiting nursing homes end of last week and today. I think we have decided to place him in a beautiful home here in my hometown. Mom is about 19 miles away, but this way I can go see him and check on him every day at lunch. The nursing home is skilled and has every amenity one could want. His hall will be for his behavior/condition, with a coded locked door entrance so they cannot escape, a bed and wheelchair with an alarm to help prevent falls, etc. The only thing is when the behavior unit at the hospital transfers him to the nursing home, we are not sure how he will respond or if he will comprehend what we are doing. I'm afraid to tell him ahead of time because it will agitate him into a state. > > I never gave much thought to this day where I would place my parent in a nursing home. Its difficult, but for now I know its the best thing for all. We cannot afford 24/7 nursing and I cannot quit my job to move in to help take care of him. > > I will update everyone once he has moved to the nursing home. > Thanks for allowing me to vent about our circumstances. You are in my thoughts and prayers through your journey with your LO. > > Pam Hutchins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Pam that may be the best thing that you can do for your dad. Good nursing homes are staffed with caring professionals who can do things for our loved ones that we can't do ourselves. My mother, though the first few months were very rough, has thrived in her nursing home and is doing MUCH better than she ever would have done at my home (not that that was an option). Their care, the routine that she needs, the social interaction with other residents - all of it - has worked together to give her a very high quality of life. Nursing homes aren't jails, they are places for residents and families to get the help they need from professionals who can provide services that we can't. When you find a good one, it can be a real blessing! Hope you will be able to let us know how things go with him . -- His, Sherry daughter/guardian of , dx 4/09 with LBD, living in a nearby NH > Hello everyone, > > I have not posted in awhile. Life has been busy and I just wasn't able to face updating until now. > > Dad's LBD has progressed. Last week he started becoming hard to handle. Mom is his caregiver and he has lived at home. His hallucinations and acting out his dreams were out of control. We took him to the doctor on Wednesday and he was prescribed Seroquel 50 mg. twice a day and Ativan (Lorazapam) every 6 hours as needed. The drugs knocked him out. I stayed over on Wed. to help mom take care of dad. She was so exhausted. We were taking turns looking in on him. See at that time he still was sleeping in his regular bed and I didn't trust he would call for help in his state of mind. Mom and I had just dozed off at 6:30 a.m. She has a monitor in his room and hers to listen. I heard a terrible crash and realized he had gotten up. He tried to go to the bathroom by himself and fell and hit the side of his head/ear on the tub base. Mom and I had to get him up on our own and that was a challenge. Dad is not a huge man but at a 150 + dead weight, he felt like a ton. We both hurt our back a little and I thought this is not working. I used a sheet wrapped around his back torso and mom wrapped both sides of the sheet with her arms and I pushed from the back and we managed to get him off the floor. Dad fell several times last summer and every time, we had him hospitalized. But this time we didn't take him in, but doctored him ourselves. It doesn't seem like the hospital does much for him when he falls except xrays his head (that's what he hits every time). By Saturday night/Sunday am he had gotten so much worse. It didn't seem like the meds were working at all or they were going against him. He was to the point then that he couldn't even stand on his own with assistance. When I let go of him due to his insistance and obstinence, he fell back on his bed. (forgot to mention we got him a hospital bed by that Friday to keep side rails up). By the last night he was home we were staying up with him around the clock because he was so bad and trying to get out of bed. We had a plan. His hospital had a behavior unit and the doctor had discussed placing him there if he got worse to help regulate his meds. We called the doctor and told him that is what we wanted to do and he told us to take him to the ER for admission. We called the ambulance due to him not able to walk. > > His been in the behavior unit almost 7 days now. He is much better than he was, but still not able to walk by himself without assistance. His meds are stabilizing him much more than when he was at home, although he is still having hallucinations, but his behavior is a little better regarding aggressiveness. > > I've noticed the last few days, he doesn't want my mom talking to any of her children while we are in his room visiting. He wants her all to himself. Can't believe he would be jealous of his own children, but I know that is not my dad's behavior if he was mentally well. > > I have 3 siblings and we have talked with mom about the possibility of placing him in a skilled care nursing home at least for awhile. Mom's back and hip is bad right now due to lifting and pulling on him. We have to give her a chance to get better and healthier. She is only 105 pound petite woman. > > Mom and I have been visiting nursing homes end of last week and today. I think we have decided to place him in a beautiful home here in my hometown. Mom is about 19 miles away, but this way I can go see him and check on him every day at lunch. The nursing home is skilled and has every amenity one could want. His hall will be for his behavior/condition, with a coded locked door entrance so they cannot escape, a bed and wheelchair with an alarm to help prevent falls, etc. The only thing is when the behavior unit at the hospital transfers him to the nursing home, we are not sure how he will respond or if he will comprehend what we are doing. I'm afraid to tell him ahead of time because it will agitate him into a state. > > I never gave much thought to this day where I would place my parent in a nursing home. Its difficult, but for now I know its the best thing for all. We cannot afford 24/7 nursing and I cannot quit my job to move in to help take care of him. > > I will update everyone once he has moved to the nursing home. > Thanks for allowing me to vent about our circumstances. You are in my thoughts and prayers through your journey with your LO. > > Pam Hutchins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Pam that may be the best thing that you can do for your dad. Good nursing homes are staffed with caring professionals who can do things for our loved ones that we can't do ourselves. My mother, though the first few months were very rough, has thrived in her nursing home and is doing MUCH better than she ever would have done at my home (not that that was an option). Their care, the routine that she needs, the social interaction with other residents - all of it - has worked together to give her a very high quality of life. Nursing homes aren't jails, they are places for residents and families to get the help they need from professionals who can provide services that we can't. When you find a good one, it can be a real blessing! Hope you will be able to let us know how things go with him . -- His, Sherry daughter/guardian of , dx 4/09 with LBD, living in a nearby NH > Hello everyone, > > I have not posted in awhile. Life has been busy and I just wasn't able to face updating until now. > > Dad's LBD has progressed. Last week he started becoming hard to handle. Mom is his caregiver and he has lived at home. His hallucinations and acting out his dreams were out of control. We took him to the doctor on Wednesday and he was prescribed Seroquel 50 mg. twice a day and Ativan (Lorazapam) every 6 hours as needed. The drugs knocked him out. I stayed over on Wed. to help mom take care of dad. She was so exhausted. We were taking turns looking in on him. See at that time he still was sleeping in his regular bed and I didn't trust he would call for help in his state of mind. Mom and I had just dozed off at 6:30 a.m. She has a monitor in his room and hers to listen. I heard a terrible crash and realized he had gotten up. He tried to go to the bathroom by himself and fell and hit the side of his head/ear on the tub base. Mom and I had to get him up on our own and that was a challenge. Dad is not a huge man but at a 150 + dead weight, he felt like a ton. We both hurt our back a little and I thought this is not working. I used a sheet wrapped around his back torso and mom wrapped both sides of the sheet with her arms and I pushed from the back and we managed to get him off the floor. Dad fell several times last summer and every time, we had him hospitalized. But this time we didn't take him in, but doctored him ourselves. It doesn't seem like the hospital does much for him when he falls except xrays his head (that's what he hits every time). By Saturday night/Sunday am he had gotten so much worse. It didn't seem like the meds were working at all or they were going against him. He was to the point then that he couldn't even stand on his own with assistance. When I let go of him due to his insistance and obstinence, he fell back on his bed. (forgot to mention we got him a hospital bed by that Friday to keep side rails up). By the last night he was home we were staying up with him around the clock because he was so bad and trying to get out of bed. We had a plan. His hospital had a behavior unit and the doctor had discussed placing him there if he got worse to help regulate his meds. We called the doctor and told him that is what we wanted to do and he told us to take him to the ER for admission. We called the ambulance due to him not able to walk. > > His been in the behavior unit almost 7 days now. He is much better than he was, but still not able to walk by himself without assistance. His meds are stabilizing him much more than when he was at home, although he is still having hallucinations, but his behavior is a little better regarding aggressiveness. > > I've noticed the last few days, he doesn't want my mom talking to any of her children while we are in his room visiting. He wants her all to himself. Can't believe he would be jealous of his own children, but I know that is not my dad's behavior if he was mentally well. > > I have 3 siblings and we have talked with mom about the possibility of placing him in a skilled care nursing home at least for awhile. Mom's back and hip is bad right now due to lifting and pulling on him. We have to give her a chance to get better and healthier. She is only 105 pound petite woman. > > Mom and I have been visiting nursing homes end of last week and today. I think we have decided to place him in a beautiful home here in my hometown. Mom is about 19 miles away, but this way I can go see him and check on him every day at lunch. The nursing home is skilled and has every amenity one could want. His hall will be for his behavior/condition, with a coded locked door entrance so they cannot escape, a bed and wheelchair with an alarm to help prevent falls, etc. The only thing is when the behavior unit at the hospital transfers him to the nursing home, we are not sure how he will respond or if he will comprehend what we are doing. I'm afraid to tell him ahead of time because it will agitate him into a state. > > I never gave much thought to this day where I would place my parent in a nursing home. Its difficult, but for now I know its the best thing for all. We cannot afford 24/7 nursing and I cannot quit my job to move in to help take care of him. > > I will update everyone once he has moved to the nursing home. > Thanks for allowing me to vent about our circumstances. You are in my thoughts and prayers through your journey with your LO. > > Pam Hutchins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Pam,  I had my Dad at the nursing home all of last week for respite care for my Mom. He is in hospice care and has been falling a lot like your Dad. We told him he was going to a place that will help him with strengthening exercises. It is a skilled uint, but he was not admitted for REAL physical therapy, which would have qualified for Medicare skilled bed, but due to his hospice diagnosis, we couldn't do that due to having to discharge from hospice. So I told the nurses and the CNAs to come in every so often and tell him to move his arms and legs up and down and they did. My Mom and I did as well. He has prgressed to the point where he doesn't even know me anymore. Most of the time, he doesn't know Mom. You do have to monitor his situation no matter where he goes because inexperienced nurses and aides with dementia just look at him as old and that is all. I made sure his list of allergies consisted of the drugs listed in this group, not to use. He takes Seroquel 25mg, 1/2 tab at each meal, and Clonazepam 25mg 1/2 tab at bedtime. He takes Xanax 0.25mg 1/2 tab, not Ativan, prn. The nursing home was giving it to him tid because we didn't have the label changed. He doesn't take it regularly due to it causing him not to awaken. He was completely out of it last Wednesday due to this. I asked them to hold it on Thursday, but didn't ask them to call the doctor and get it changed to prn q4hs, if he needed it due to increased anxiety. Thursday night was HORRIBLE! He was wringing his hands and crying, wanting to go home. I begged the nurse to call the doctor and she did. I'm not sure she actually gave it to him, because Friday, I was told he was awake all night except for about 2 hours. I took him home Friday morning and he has been sleeping most of the time, since. Everyone needs a break, but it usually comes at the expense of the patient unless you are there most of the time. Mom was there during the day, and I was there until he went to bed around 8 or 9 pm. He is better as of yesterday, but his condition has changed and I'm not sure if he will make it to where he was before he went last Monday. We do what we have to do. Please read all the posts from these dear people who have walked the walk and know exactly what NOT to do with him. Each person is different, althought with this disease, medication monitoring is everything. Best of luck, , daughter of Ralph, 82, almost 83 years of age with LBD now 5 years that we know of.  To: LBDcaregivers Sent: Sunday, April 1, 2012 12:26 AM Subject: Update on my dad Jim  Hello everyone, I have not posted in awhile. Life has been busy and I just wasn't able to face updating until now. Dad's LBD has progressed. Last week he started becoming hard to handle. Mom is his caregiver and he has lived at home. His hallucinations and acting out his dreams were out of control. We took him to the doctor on Wednesday and he was prescribed Seroquel 50 mg. twice a day and Ativan (Lorazapam) every 6 hours as needed. The drugs knocked him out. I stayed over on Wed. to help mom take care of dad. She was so exhausted. We were taking turns looking in on him. See at that time he still was sleeping in his regular bed and I didn't trust he would call for help in his state of mind. Mom and I had just dozed off at 6:30 a.m. She has a monitor in his room and hers to listen. I heard a terrible crash and realized he had gotten up. He tried to go to the bathroom by himself and fell and hit the side of his head/ear on the tub base. Mom and I had to get him up on our own and that was a challenge. Dad is not a huge man but at a 150 + dead weight, he felt like a ton. We both hurt our back a little and I thought this is not working. I used a sheet wrapped around his back torso and mom wrapped both sides of the sheet with her arms and I pushed from the back and we managed to get him off the floor. Dad fell several times last summer and every time, we had him hospitalized. But this time we didn't take him in, but doctored him ourselves. It doesn't seem like the hospital does much for him when he falls except xrays his head (that's what he hits every time). By Saturday night/Sunday am he had gotten so much worse. It didn't seem like the meds were working at all or they were going against him. He was to the point then that he couldn't even stand on his own with assistance. When I let go of him due to his insistance and obstinence, he fell back on his bed. (forgot to mention we got him a hospital bed by that Friday to keep side rails up). By the last night he was home we were staying up with him around the clock because he was so bad and trying to get out of bed. We had a plan. His hospital had a behavior unit and the doctor had discussed placing him there if he got worse to help regulate his meds. We called the doctor and told him that is what we wanted to do and he told us to take him to the ER for admission. We called the ambulance due to him not able to walk. His been in the behavior unit almost 7 days now. He is much better than he was, but still not able to walk by himself without assistance. His meds are stabilizing him much more than when he was at home, although he is still having hallucinations, but his behavior is a little better regarding aggressiveness. I've noticed the last few days, he doesn't want my mom talking to any of her children while we are in his room visiting. He wants her all to himself. Can't believe he would be jealous of his own children, but I know that is not my dad's behavior if he was mentally well. I have 3 siblings and we have talked with mom about the possibility of placing him in a skilled care nursing home at least for awhile. Mom's back and hip is bad right now due to lifting and pulling on him. We have to give her a chance to get better and healthier. She is only 105 pound petite woman. Mom and I have been visiting nursing homes end of last week and today. I think we have decided to place him in a beautiful home here in my hometown. Mom is about 19 miles away, but this way I can go see him and check on him every day at lunch. The nursing home is skilled and has every amenity one could want. His hall will be for his behavior/condition, with a coded locked door entrance so they cannot escape, a bed and wheelchair with an alarm to help prevent falls, etc. The only thing is when the behavior unit at the hospital transfers him to the nursing home, we are not sure how he will respond or if he will comprehend what we are doing. I'm afraid to tell him ahead of time because it will agitate him into a state. I never gave much thought to this day where I would place my parent in a nursing home. Its difficult, but for now I know its the best thing for all. We cannot afford 24/7 nursing and I cannot quit my job to move in to help take care of him. I will update everyone once he has moved to the nursing home. Thanks for allowing me to vent about our circumstances. You are in my thoughts and prayers through your journey with your LO. Pam Hutchins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Pam,  I had my Dad at the nursing home all of last week for respite care for my Mom. He is in hospice care and has been falling a lot like your Dad. We told him he was going to a place that will help him with strengthening exercises. It is a skilled uint, but he was not admitted for REAL physical therapy, which would have qualified for Medicare skilled bed, but due to his hospice diagnosis, we couldn't do that due to having to discharge from hospice. So I told the nurses and the CNAs to come in every so often and tell him to move his arms and legs up and down and they did. My Mom and I did as well. He has prgressed to the point where he doesn't even know me anymore. Most of the time, he doesn't know Mom. You do have to monitor his situation no matter where he goes because inexperienced nurses and aides with dementia just look at him as old and that is all. I made sure his list of allergies consisted of the drugs listed in this group, not to use. He takes Seroquel 25mg, 1/2 tab at each meal, and Clonazepam 25mg 1/2 tab at bedtime. He takes Xanax 0.25mg 1/2 tab, not Ativan, prn. The nursing home was giving it to him tid because we didn't have the label changed. He doesn't take it regularly due to it causing him not to awaken. He was completely out of it last Wednesday due to this. I asked them to hold it on Thursday, but didn't ask them to call the doctor and get it changed to prn q4hs, if he needed it due to increased anxiety. Thursday night was HORRIBLE! He was wringing his hands and crying, wanting to go home. I begged the nurse to call the doctor and she did. I'm not sure she actually gave it to him, because Friday, I was told he was awake all night except for about 2 hours. I took him home Friday morning and he has been sleeping most of the time, since. Everyone needs a break, but it usually comes at the expense of the patient unless you are there most of the time. Mom was there during the day, and I was there until he went to bed around 8 or 9 pm. He is better as of yesterday, but his condition has changed and I'm not sure if he will make it to where he was before he went last Monday. We do what we have to do. Please read all the posts from these dear people who have walked the walk and know exactly what NOT to do with him. Each person is different, althought with this disease, medication monitoring is everything. Best of luck, , daughter of Ralph, 82, almost 83 years of age with LBD now 5 years that we know of.  To: LBDcaregivers Sent: Sunday, April 1, 2012 12:26 AM Subject: Update on my dad Jim  Hello everyone, I have not posted in awhile. Life has been busy and I just wasn't able to face updating until now. Dad's LBD has progressed. Last week he started becoming hard to handle. Mom is his caregiver and he has lived at home. His hallucinations and acting out his dreams were out of control. We took him to the doctor on Wednesday and he was prescribed Seroquel 50 mg. twice a day and Ativan (Lorazapam) every 6 hours as needed. The drugs knocked him out. I stayed over on Wed. to help mom take care of dad. She was so exhausted. We were taking turns looking in on him. See at that time he still was sleeping in his regular bed and I didn't trust he would call for help in his state of mind. Mom and I had just dozed off at 6:30 a.m. She has a monitor in his room and hers to listen. I heard a terrible crash and realized he had gotten up. He tried to go to the bathroom by himself and fell and hit the side of his head/ear on the tub base. Mom and I had to get him up on our own and that was a challenge. Dad is not a huge man but at a 150 + dead weight, he felt like a ton. We both hurt our back a little and I thought this is not working. I used a sheet wrapped around his back torso and mom wrapped both sides of the sheet with her arms and I pushed from the back and we managed to get him off the floor. Dad fell several times last summer and every time, we had him hospitalized. But this time we didn't take him in, but doctored him ourselves. It doesn't seem like the hospital does much for him when he falls except xrays his head (that's what he hits every time). By Saturday night/Sunday am he had gotten so much worse. It didn't seem like the meds were working at all or they were going against him. He was to the point then that he couldn't even stand on his own with assistance. When I let go of him due to his insistance and obstinence, he fell back on his bed. (forgot to mention we got him a hospital bed by that Friday to keep side rails up). By the last night he was home we were staying up with him around the clock because he was so bad and trying to get out of bed. We had a plan. His hospital had a behavior unit and the doctor had discussed placing him there if he got worse to help regulate his meds. We called the doctor and told him that is what we wanted to do and he told us to take him to the ER for admission. We called the ambulance due to him not able to walk. His been in the behavior unit almost 7 days now. He is much better than he was, but still not able to walk by himself without assistance. His meds are stabilizing him much more than when he was at home, although he is still having hallucinations, but his behavior is a little better regarding aggressiveness. I've noticed the last few days, he doesn't want my mom talking to any of her children while we are in his room visiting. He wants her all to himself. Can't believe he would be jealous of his own children, but I know that is not my dad's behavior if he was mentally well. I have 3 siblings and we have talked with mom about the possibility of placing him in a skilled care nursing home at least for awhile. Mom's back and hip is bad right now due to lifting and pulling on him. We have to give her a chance to get better and healthier. She is only 105 pound petite woman. Mom and I have been visiting nursing homes end of last week and today. I think we have decided to place him in a beautiful home here in my hometown. Mom is about 19 miles away, but this way I can go see him and check on him every day at lunch. The nursing home is skilled and has every amenity one could want. His hall will be for his behavior/condition, with a coded locked door entrance so they cannot escape, a bed and wheelchair with an alarm to help prevent falls, etc. The only thing is when the behavior unit at the hospital transfers him to the nursing home, we are not sure how he will respond or if he will comprehend what we are doing. I'm afraid to tell him ahead of time because it will agitate him into a state. I never gave much thought to this day where I would place my parent in a nursing home. Its difficult, but for now I know its the best thing for all. We cannot afford 24/7 nursing and I cannot quit my job to move in to help take care of him. I will update everyone once he has moved to the nursing home. Thanks for allowing me to vent about our circumstances. You are in my thoughts and prayers through your journey with your LO. Pam Hutchins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Pam,  I had my Dad at the nursing home all of last week for respite care for my Mom. He is in hospice care and has been falling a lot like your Dad. We told him he was going to a place that will help him with strengthening exercises. It is a skilled uint, but he was not admitted for REAL physical therapy, which would have qualified for Medicare skilled bed, but due to his hospice diagnosis, we couldn't do that due to having to discharge from hospice. So I told the nurses and the CNAs to come in every so often and tell him to move his arms and legs up and down and they did. My Mom and I did as well. He has prgressed to the point where he doesn't even know me anymore. Most of the time, he doesn't know Mom. You do have to monitor his situation no matter where he goes because inexperienced nurses and aides with dementia just look at him as old and that is all. I made sure his list of allergies consisted of the drugs listed in this group, not to use. He takes Seroquel 25mg, 1/2 tab at each meal, and Clonazepam 25mg 1/2 tab at bedtime. He takes Xanax 0.25mg 1/2 tab, not Ativan, prn. The nursing home was giving it to him tid because we didn't have the label changed. He doesn't take it regularly due to it causing him not to awaken. He was completely out of it last Wednesday due to this. I asked them to hold it on Thursday, but didn't ask them to call the doctor and get it changed to prn q4hs, if he needed it due to increased anxiety. Thursday night was HORRIBLE! He was wringing his hands and crying, wanting to go home. I begged the nurse to call the doctor and she did. I'm not sure she actually gave it to him, because Friday, I was told he was awake all night except for about 2 hours. I took him home Friday morning and he has been sleeping most of the time, since. Everyone needs a break, but it usually comes at the expense of the patient unless you are there most of the time. Mom was there during the day, and I was there until he went to bed around 8 or 9 pm. He is better as of yesterday, but his condition has changed and I'm not sure if he will make it to where he was before he went last Monday. We do what we have to do. Please read all the posts from these dear people who have walked the walk and know exactly what NOT to do with him. Each person is different, althought with this disease, medication monitoring is everything. Best of luck, , daughter of Ralph, 82, almost 83 years of age with LBD now 5 years that we know of.  To: LBDcaregivers Sent: Sunday, April 1, 2012 12:26 AM Subject: Update on my dad Jim  Hello everyone, I have not posted in awhile. Life has been busy and I just wasn't able to face updating until now. Dad's LBD has progressed. Last week he started becoming hard to handle. Mom is his caregiver and he has lived at home. His hallucinations and acting out his dreams were out of control. We took him to the doctor on Wednesday and he was prescribed Seroquel 50 mg. twice a day and Ativan (Lorazapam) every 6 hours as needed. The drugs knocked him out. I stayed over on Wed. to help mom take care of dad. She was so exhausted. We were taking turns looking in on him. See at that time he still was sleeping in his regular bed and I didn't trust he would call for help in his state of mind. Mom and I had just dozed off at 6:30 a.m. She has a monitor in his room and hers to listen. I heard a terrible crash and realized he had gotten up. He tried to go to the bathroom by himself and fell and hit the side of his head/ear on the tub base. Mom and I had to get him up on our own and that was a challenge. Dad is not a huge man but at a 150 + dead weight, he felt like a ton. We both hurt our back a little and I thought this is not working. I used a sheet wrapped around his back torso and mom wrapped both sides of the sheet with her arms and I pushed from the back and we managed to get him off the floor. Dad fell several times last summer and every time, we had him hospitalized. But this time we didn't take him in, but doctored him ourselves. It doesn't seem like the hospital does much for him when he falls except xrays his head (that's what he hits every time). By Saturday night/Sunday am he had gotten so much worse. It didn't seem like the meds were working at all or they were going against him. He was to the point then that he couldn't even stand on his own with assistance. When I let go of him due to his insistance and obstinence, he fell back on his bed. (forgot to mention we got him a hospital bed by that Friday to keep side rails up). By the last night he was home we were staying up with him around the clock because he was so bad and trying to get out of bed. We had a plan. His hospital had a behavior unit and the doctor had discussed placing him there if he got worse to help regulate his meds. We called the doctor and told him that is what we wanted to do and he told us to take him to the ER for admission. We called the ambulance due to him not able to walk. His been in the behavior unit almost 7 days now. He is much better than he was, but still not able to walk by himself without assistance. His meds are stabilizing him much more than when he was at home, although he is still having hallucinations, but his behavior is a little better regarding aggressiveness. I've noticed the last few days, he doesn't want my mom talking to any of her children while we are in his room visiting. He wants her all to himself. Can't believe he would be jealous of his own children, but I know that is not my dad's behavior if he was mentally well. I have 3 siblings and we have talked with mom about the possibility of placing him in a skilled care nursing home at least for awhile. Mom's back and hip is bad right now due to lifting and pulling on him. We have to give her a chance to get better and healthier. She is only 105 pound petite woman. Mom and I have been visiting nursing homes end of last week and today. I think we have decided to place him in a beautiful home here in my hometown. Mom is about 19 miles away, but this way I can go see him and check on him every day at lunch. The nursing home is skilled and has every amenity one could want. His hall will be for his behavior/condition, with a coded locked door entrance so they cannot escape, a bed and wheelchair with an alarm to help prevent falls, etc. The only thing is when the behavior unit at the hospital transfers him to the nursing home, we are not sure how he will respond or if he will comprehend what we are doing. I'm afraid to tell him ahead of time because it will agitate him into a state. I never gave much thought to this day where I would place my parent in a nursing home. Its difficult, but for now I know its the best thing for all. We cannot afford 24/7 nursing and I cannot quit my job to move in to help take care of him. I will update everyone once he has moved to the nursing home. Thanks for allowing me to vent about our circumstances. You are in my thoughts and prayers through your journey with your LO. Pam Hutchins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Pam, Sounds like you have a good plan. I'm glad your mom is in agreement. Your dad's jealousy is not a sign of mental illness; it's a sign of dementia. I'm sure it's a very hard symptom for the family to deal with. Good luck, Robin > > Hello everyone, > > I have not posted in awhile. Life has been busy and I just wasn't able to face updating until now. > > Dad's LBD has progressed. Last week he started becoming hard to handle. Mom is his caregiver and he has lived at home. His hallucinations and acting out his dreams were out of control. We took him to the doctor on Wednesday and he was prescribed Seroquel 50 mg. twice a day and Ativan (Lorazapam) every 6 hours as needed. The drugs knocked him out. I stayed over on Wed. to help mom take care of dad. She was so exhausted. We were taking turns looking in on him. See at that time he still was sleeping in his regular bed and I didn't trust he would call for help in his state of mind. Mom and I had just dozed off at 6:30 a.m. She has a monitor in his room and hers to listen. I heard a terrible crash and realized he had gotten up. He tried to go to the bathroom by himself and fell and hit the side of his head/ear on the tub base. Mom and I had to get him up on our own and that was a challenge. Dad is not a huge man but at a 150 + dead weight, he felt like a ton. We both hurt our back a little and I thought this is not working. ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Pam, Sounds like you have a good plan. I'm glad your mom is in agreement. Your dad's jealousy is not a sign of mental illness; it's a sign of dementia. I'm sure it's a very hard symptom for the family to deal with. Good luck, Robin > > Hello everyone, > > I have not posted in awhile. Life has been busy and I just wasn't able to face updating until now. > > Dad's LBD has progressed. Last week he started becoming hard to handle. Mom is his caregiver and he has lived at home. His hallucinations and acting out his dreams were out of control. We took him to the doctor on Wednesday and he was prescribed Seroquel 50 mg. twice a day and Ativan (Lorazapam) every 6 hours as needed. The drugs knocked him out. I stayed over on Wed. to help mom take care of dad. She was so exhausted. We were taking turns looking in on him. See at that time he still was sleeping in his regular bed and I didn't trust he would call for help in his state of mind. Mom and I had just dozed off at 6:30 a.m. She has a monitor in his room and hers to listen. I heard a terrible crash and realized he had gotten up. He tried to go to the bathroom by himself and fell and hit the side of his head/ear on the tub base. Mom and I had to get him up on our own and that was a challenge. Dad is not a huge man but at a 150 + dead weight, he felt like a ton. We both hurt our back a little and I thought this is not working. ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Pam, Sounds like you have a good plan. I'm glad your mom is in agreement. Your dad's jealousy is not a sign of mental illness; it's a sign of dementia. I'm sure it's a very hard symptom for the family to deal with. Good luck, Robin > > Hello everyone, > > I have not posted in awhile. Life has been busy and I just wasn't able to face updating until now. > > Dad's LBD has progressed. Last week he started becoming hard to handle. Mom is his caregiver and he has lived at home. His hallucinations and acting out his dreams were out of control. We took him to the doctor on Wednesday and he was prescribed Seroquel 50 mg. twice a day and Ativan (Lorazapam) every 6 hours as needed. The drugs knocked him out. I stayed over on Wed. to help mom take care of dad. She was so exhausted. We were taking turns looking in on him. See at that time he still was sleeping in his regular bed and I didn't trust he would call for help in his state of mind. Mom and I had just dozed off at 6:30 a.m. She has a monitor in his room and hers to listen. I heard a terrible crash and realized he had gotten up. He tried to go to the bathroom by himself and fell and hit the side of his head/ear on the tub base. Mom and I had to get him up on our own and that was a challenge. Dad is not a huge man but at a 150 + dead weight, he felt like a ton. We both hurt our back a little and I thought this is not working. ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 To Pam and : Thank you for sharing your stories. I am not at the point of putting my husband in a NH. I appreciate your views on what you have done. My hope and prayer is for my husband to go from home to hospice. He is about mid-stage from what I have read and the neurologist's point of view. I pray that both of you will be guided in the decisions you will have to make now and in the future!!!! Vivian (husband dx with PD, then LBD in 2010) On Sun, Apr 1, 2012 at 12:31 PM, rriddle_travel wrote: > ** > > > Pam, > Sounds like you have a good plan. I'm glad your mom is in agreement. Your > dad's jealousy is not a sign of mental illness; it's a sign of dementia. > I'm sure it's a very hard symptom for the family to deal with. > Good luck, > Robin > > > > > > > Hello everyone, > > > > I have not posted in awhile. Life has been busy and I just wasn't able > to face updating until now. > > > > Dad's LBD has progressed. Last week he started becoming hard to handle. > Mom is his caregiver and he has lived at home. His hallucinations and > acting out his dreams were out of control. We took him to the doctor on > Wednesday and he was prescribed Seroquel 50 mg. twice a day and Ativan > (Lorazapam) every 6 hours as needed. The drugs knocked him out. I stayed > over on Wed. to help mom take care of dad. She was so exhausted. We were > taking turns looking in on him. See at that time he still was sleeping in > his regular bed and I didn't trust he would call for help in his state of > mind. Mom and I had just dozed off at 6:30 a.m. She has a monitor in his > room and hers to listen. I heard a terrible crash and realized he had > gotten up. He tried to go to the bathroom by himself and fell and hit the > side of his head/ear on the tub base. Mom and I had to get him up on our > own and that was a challenge. Dad is not a huge man but at a 150 + dead > weight, he felt like a ton. We both hurt our back a little and I thought > this is not working. ... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 To Pam and : Thank you for sharing your stories. I am not at the point of putting my husband in a NH. I appreciate your views on what you have done. My hope and prayer is for my husband to go from home to hospice. He is about mid-stage from what I have read and the neurologist's point of view. I pray that both of you will be guided in the decisions you will have to make now and in the future!!!! Vivian (husband dx with PD, then LBD in 2010) On Sun, Apr 1, 2012 at 12:31 PM, rriddle_travel wrote: > ** > > > Pam, > Sounds like you have a good plan. I'm glad your mom is in agreement. Your > dad's jealousy is not a sign of mental illness; it's a sign of dementia. > I'm sure it's a very hard symptom for the family to deal with. > Good luck, > Robin > > > > > > > Hello everyone, > > > > I have not posted in awhile. Life has been busy and I just wasn't able > to face updating until now. > > > > Dad's LBD has progressed. Last week he started becoming hard to handle. > Mom is his caregiver and he has lived at home. His hallucinations and > acting out his dreams were out of control. We took him to the doctor on > Wednesday and he was prescribed Seroquel 50 mg. twice a day and Ativan > (Lorazapam) every 6 hours as needed. The drugs knocked him out. I stayed > over on Wed. to help mom take care of dad. She was so exhausted. We were > taking turns looking in on him. See at that time he still was sleeping in > his regular bed and I didn't trust he would call for help in his state of > mind. Mom and I had just dozed off at 6:30 a.m. She has a monitor in his > room and hers to listen. I heard a terrible crash and realized he had > gotten up. He tried to go to the bathroom by himself and fell and hit the > side of his head/ear on the tub base. Mom and I had to get him up on our > own and that was a challenge. Dad is not a huge man but at a 150 + dead > weight, he felt like a ton. We both hurt our back a little and I thought > this is not working. ... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2012 Report Share Posted April 2, 2012 This is a difficult time for you, your mother and your siblings. From my experiences, I can tell you, as will others here, that for the most part, it is the best thing you can do. He will be in the Nursing Home, getting skilled care around the clock. He will get fed properly, get his meds, and all the different care he needs. In the meantime, you and your mother will be able to sleep at night, feel rested and taking care of yourselves as well as your father. You can go visit anytime you wish and the time you spend will be quality time. I will caution you to make sure they know what meds are not allowed for LBD patients. It is very important. Also, if occasionally you can go in at " odd " times to visit it seems to insure better care. We were able to visit my husband every day but they never knew when we might arrive. I went 4 days a week and my 3 kids covered the other days. In over a year, I don't think we missed more than 2 days. But it is difficult. Good Luck and God Bless all of you. Leona Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14, 2009. I am handling it OK. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2012 Report Share Posted April 2, 2012 This is a difficult time for you, your mother and your siblings. From my experiences, I can tell you, as will others here, that for the most part, it is the best thing you can do. He will be in the Nursing Home, getting skilled care around the clock. He will get fed properly, get his meds, and all the different care he needs. In the meantime, you and your mother will be able to sleep at night, feel rested and taking care of yourselves as well as your father. You can go visit anytime you wish and the time you spend will be quality time. I will caution you to make sure they know what meds are not allowed for LBD patients. It is very important. Also, if occasionally you can go in at " odd " times to visit it seems to insure better care. We were able to visit my husband every day but they never knew when we might arrive. I went 4 days a week and my 3 kids covered the other days. In over a year, I don't think we missed more than 2 days. But it is difficult. Good Luck and God Bless all of you. Leona Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14, 2009. I am handling it OK. Quote Link to comment Share on other sites More sharing options...
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